So, what now?

Since I moved house (end of last year!) I've been avoiding sorting out referrals; mainly mental health ones. There are various reasons for this, such as the exhaustion from the move,  and other things taking priority, but I've been avoiding delving into all my mental health problems.

I've made some progress on my own, but I keep going back to square one, and I need some proper support. As you may know I did have a psychiatrist, and was due to see her soon. Her secretary said she would call back to arrange a home visit so I could then be transferred to the mental health team in the area I live now. It all sounded very simple and at the time I felt relieved. After weeks of no reply from secretary or psychiatrist, I chased them up and they'd now decided that I would have to just go to my GP and get referred to the mental health team where I live now. There would be no appointment for a meds review or to transfer me.

I felt as if I'd been forgotten about. To be honest, I've felt like that a lot of times with mental health services. I'm sort of left to my own devices, with no continuous support (even though I have frequent suicidal thoughts and self harm regularly). I could've been a real risk to myself, and no one would've known.

Anyway, I have approached my GP about referral to my local mental health services. I told her that the whole thing had been really confusing and I didn't know if I'd be getting the therapy that had been suggested. Unfortunately the GP didn't know much about different therapies, so she upped my Sertraline dose; based on the fact that my Depression score was still high (21 I think?). It turns out that I can self refer to the primary mental healthcare team; who will then refer me to the appropriate service. I have a feeling they'll just try and get me to go through CBT all over again. If they do, I'm very tempted to tell them to forget it. That may be the depression talking, but I'm so fed up of getting so far, being built up with promises of various services, and then it all being taken away.

I may have mentioned this before, but I've been really confused about what my actual "official" diagnoses are. My GP showed me a letter from my medical notes (possibly the psychiatrist one?) and I noticed it said Moderate Depression, Anxiety, & Agoraphobia. The contents of the letter mentioned "symptoms of OCD" too. I didn't get chance to see more of the letter than that, but it kind of annoyed me that I'd been told one thing (i.e. the psych agreeing that I do have OCD) and another thing had been written down. It makes me wonder if other things I've been told, haven't made their way into my notes either? For example, the two therapies that were suggested to me (EMDR, & Psychodynamic therapy). I really want to get a copy of my medical records, but keep forgetting to ask. I just want things cleared up! I feel as if I'm being kept out of the loop so to speak. It reminds me of the time I'd been under the impression I had an M.E. diagnosis, but my notes said "Anxiety Disorder".

Back to the point; self referral. I have to ring up to self refer, so it's going to take more time for me to build up the courage for that. It's taken long enough for me to be completely honest and open with mental health staff, so it feels as if I'm back to square one!

Have you found yourself very lost with mental health services, and whether things suggested to you (diagnoses, therapies etc) were actually written down in your medical notes? I'd be very interested to hear how similar my experience is to others'.

"If you can do X, then you can do Y"

The above phrase, and those similar to it, really piss me off. Usually X and Y are quite different things, and the assumption that the ability to do X makes Y possible too, is so simplistic and just plain inaccurate. This kind of belief seems to form the basis of disability assessments, and ignores how different situations lead to different responses and abilities from the person (trying to) cope with them.

Here's a really obvious example : "If you can type on social media, then you can work". Yes, typing is a task done in many jobs, but being able to type a few words in response to acquaintances online isn't the same as concentrating for hours on tasks involving typing, and meeting the targets that employees are often set. In such a job, it's likely you'll need to communicate with other members of staff, fetch and carry things, attend meetings, and use the phone amongst other tasks. So no. It's not just typing.

Another one would be the assumption that, if you can cope with one group situation, you can cope with every group situation. Again, other things need to be considered. How big is the group? How far away is the session? Can the person always get transport there/if they need someone to accompany them? Is the group situation a formal or informal one? Can the person leave if/when they need? What facilities are there (toilets, drinks facilities, disabled facilities etc).

I have various anxiety disorders that can severely affect what I'm able to do. Different environments and situations can have a big impact on me as well. On a good day, I may be able to meet a couple of friends in town for coffee (as long as I can get transport from my dad or one of my friends). It has to be close friends who understand that I struggle, and are patient with me. They have to know that I need to be in the quieter areas of town, have places to sit down, and they need to be ok with it if I'm struggling too much and need to go home.

This doesn't mean I could cope with *any* group situation. A while back, I was referred to the Expert Patients Programme to help me manage the combination of mental and physical problems that I have. The content of the programme sounded interesting, and at the time I was feeling a bit lost as to how to cope with everything. Unfortunately, the thing that stopped me taking part was the fact that it was a group programme. I knew that everyone there would be in a similar boat to me, and that the staff would be understanding if I needed to leave, but this didn't stop me from being far too anxious to go.

I understand the need to apply things to different situations, but there are so many other things to consider. For lack of better phrasing, if someone can do X, then that only shows that they can do X. Y may be impossible for them. Please believe us, even if you can't fully understand the complexities of our health problems.

More than a pet

Since my last post, there's been some changes in my life. I always promised myself that if I moved into a bungalow, where the landlord allowed pets, I would get a cat. I've had one before, and found that this helped my mental health a little.

For me I find it's having someone to look after, some responsibility. It's more than a distraction. It's that feeling of being needed I think. Knowing that you've given a loving home to your cat is of course a big positive thing too.

The cat I have now is so affectionate. His name is Billie, he's my little shadow, and I love him to bits. He can be a little terror sometimes, but it's all worth it. Physically, it's taking its toll on me, but I don't really mind. Mentally, I feel that my general anxiety isn't as bad.

I'm having to push myself more right now anyway. My dad's physical health has worsened, and he will be having his first knee replacement tomorrow. He is due to have another replacement of his other knee too, but I'm not sure when that will be done.

I did want to say my mental health overall was a little better, but it seems I've had a relapse with the depression. I think a few things may have triggered it, but it can be hard to pinpoint. I feel as if I'm just about holding on right now. I'm having times where I feel numb, times when I'm very self loathing and guilt ridden, and times when I just feel *wrong*. I don't feel comfortable in my own skin.

I'm really hoping that this is just a bad patch that will ease soon. I'm waiting for a call back from my psychiatrist to arrange a meds review, so will have to mention this to her. I do need to get some support from mental health services in the area I live now, but I'm very confused as to what's available. I also don't know if I'm ready to do any sort of therapy just yet either.

I wish I had more to say in this post, but I'm finding it hard to find the words. I'm struggling, and I think it's taken a little while for me to realise that. I'm going to try the self care thing, cuddle Billie cat, and get what sleep I can. Thanks for reading.

A Review of MedNexus: A more accurate search engine for medical information.

MedNexus is a search engine; specifically designed for medical information. It began as a website only accessible for medical professionals, but has now been made available for patients. What sets it apart from other search engines (Google, for instance) is that it only displays accurate and reliable information. The user does not need to sift through pages of irrelevant information in order to get the answers they need. As a chronic illness blogger, I like to keep myself informed on various things to do with the medical conditions that I talk about; whether it is how the condition is diagnosed, treatments available, new research developments, or anything else that may be useful for myself and my readers. I decided to test the MedNexus website, to see how well it delivered on its promises.


Home page

The layout of MedNexus' home page is a very clear one; with easy to read sans serif font. The search box is right in the middle of the page, and I find my eyes are drawn to it straightaway. If you want to go straight to common, chronic, seasonal, or recently searched images, suggestions are available on the same page. They are clearly laid out and organised into columns.

As you scroll down, there's a short description of what the website does; i.e. its purpose. It also states why it is the ideal search engine for medical information specifically.

 "For all levels of expertise". This quote implies that there are different ways you can search; depending on what you need to find. It shows how this search engine can work for you; regardless of your level of expertise.

The information on the homepage is laid out in a clear, concise way. It is separated into small, easy to read paragraphs and columns; with a clear subheading for each.


Testing the search facility

I decided to try out a general search then a more specific search, to see how easy it would be to get the exact information I desired. As you may know, one of my medical conditions is Fibromyalgia. I wanted to see how accurate the results would be, if I searched for information on this.


General search

To start off the search, I simply typed in "Fibromyalgia". I found that as I began to type, a drop down menu was displayed; giving search suggestions. Some of these suggestions included "What is Fibromyalgia?", and "How do you treat Fibromyalgia?". I found this a useful feature, as it allowed me to narrow down my search even more; so was more likely to result in quickly finding the answer to a particular question about the condition.

The results could be ordered by relevance or most recent. They are also categorized into "Health topics", "Published research", and "Forum discussions".


Specific search

For this search, I typed in "What are the risk factors for Fibromyalgia?". The same categories as the general search were displayed in the results. The first result I came across was entitled "Fibromyalgia causes"

Looking around the results page, I noticed the left hand side displayed sections entitled "Common risk factors", "Previous searches", and "Explained". I found that these broke down the results and explained them in a less scientific way.


Other links

Other links available on each page include "Home", "About", "FAQ", "Blog", "Privacy", "TOS", "Contact", and links to MedNexus' Facebook and Twitter pages.

I was disappointed to find that when the Facebook or Twitter link is clicked, it opens in the same tab. This could be an inconvenience for people who want to keep a particular page open on the main site. It would be better if these links opened in a new tab or window by default.


Overview

Overall, I find this search engine a very useful one. It cuts down the time taken to search for the information I need, and I do not have to pore through medical jargon in order to obtain accurate and informative answers. On the whole, this appears to be a fairly accessible website; in terms of its clear layout, the font it uses, and how it can be navigated. I am very likely to use MedNexus in future; as I feel it meets my needs much better than other search engines.


What do you think?

MedNexus are looking for feedback, and suggestions on how they can improve. They would like you to complete this short survey  to share your experiences on this. I recommend giving this website a go, and seeing if it works for you!


Resources

1. MedNexus Homepage: http://www.mednexus.io/

2. MedNexus Facebook page: https://www.facebook.com/mednexus.io

3. MedNexus Twitter page: https://twitter.com/med_nexus

4. MedNexus Survey: https://www.surveymonkey.com/r/2D5ZR58

We Are Struggling

I seem to be in a constant daze right now, and I'm getting frustrated that I'm unable to concentrate much. There is so much going on, and so many worries, that I'm struggling to cope with it all.

Both my parents and I have various long term illnesses and disabilities. Mum and I can't work, and it looks as if my dad may have to consider giving up work soon too. I feel so guilty that my dad has to do so much around the house. I do try so hard to do more, and I'm nearly always pushing myself too far (out of necessity!). It's getting to a point where we are worrying about the future. How will we manage around the house? Can we afford to keep up with bills? Will any of us be able to do some sort of work?

We have appointments coming up that may/may not provide answers; but in the meantime we are left trying to figure out what kind of support we can get (social care, benefits etc). If anyone thinks a life on benefits is an easy one, they seriously need to sit down and listen to people's experiences. It. Is. Not. Easy.

My parents, friends, and my boyfriend are all so supportive and understanding of my health problems. I don't know what I'd do without their support. They see/read about my good and bad days, so mostly understand how much I struggle and why I'm not able to work. I so wish that certain other relatives could understand that too though. I'm so tired of being asked if I'm back in work yet, why can't I do *insert completely unreasonable job here* etc. They seem to believe that I will recover at some point, and the idea of me never getting better seems impossible to them. I'm sick of having to explain over and over. It's taken me a while to get to a point of acceptance, and I still have times where I get so angry, frustrated, and upset that nothing is improving. I'm just trying to manage the symptoms I'm able to as best I can, and do what I can to enjoy life. That is my way of coping. Of course I read up on any new research I come across, but I need to be realistic and accept that right now all I can do is try to manage my conditions.

Support from loved ones is so important. Educate yourself, listen, do not judge, know that you may not fully understand but you need to accept what we are telling you. It is hard enough to deal with the daily struggles of having a chronic illness.

You may have noticed that I now have a donate button on my blog. If mum doesn't get any more help from her current specialist, we may have to travel to a hospital with more facilities, funding for new treatments etc. This will of course mean more expenses, and I'm not sure how we could come up with the money. I'm terrible at asking for money but I may need to soon. In return, I intend to blog more often and if there's anything in particular you'd like me to write about, give advice on etc, then leave a comment.

Big Changes

It's been a good couple of months since my last post, and I did mean to talk about my progress with the physiotherapy sessions! Truth is, there have been some big (and quick!) changes recently.

My parents and I moved house at the end of last month. Thanks to the letting agent rushing us along, we had less than a month to confirm we wanted the place, come up with deposit, and move in. Even without all of our disabilities, this is a very stressful thing to do! We are still surrounded by boxes, but we are much happier in this new place. It is easier to get round the house, the area is flatter, and the shops, GP surgery etc are nearer. It is a much quieter area too.

I only managed to have one physio appointment before the move, and am planning to ask to be referred to the physio place next door to the new GP's. Hopefully the wait won't be too long. I just want to be able to do a bit more (especially with my dad's health worsening).

The prospect of so many changes has been very daunting, but I'm getting a bit less panicky about it now. Things such as changing doctors, contacting various companies (including the Jobcentre eep!) to change address, the mental and physical exhaustion (not to mention the extra pain) from the move itself, have been very hard to cope with. So many things to consider, my mind has been racing. It is a change for the better, but it has involved pushing myself to my absolute limits in order to help out as much as I can.

Thankfully some of my uncles helped with the move itself. We had removal people come too. Without them, I don't think we'd have managed it!

Since my last post, I've noticed new and worsening symptoms. I put some of it down to overdoing things, but other symptoms have just been strange. I have a couple of nurses appointments, but I do need to make a doctor's appointment at some point. I did mention them to my previous GP, who has referred to them in my notes (hopefully). I'm finding that nearly every time I move my head, especially if turning to the left or right, I get a huge wave of dizziness. At the same time as this dizziness, I get pins and needles as well as weakness in my right hand. This has caused me to drop things suddenly, and has really started to bother me. My co ordination has been off too, and I'm tripping over more often. Now and again, when I get the dizziness, I feel & hear a sort of scratching in my head. It's very unnerving! This may be unrelated, but I'm getting more headaches & my eyesight is getting worse too.

As for the physio appointment, it went pretty well. There were a couple of things I wasn't happy with, but generally I think they understood the kinds of problems I had, and took that into consideration. I've not been able to keep completely to the exercise programme (the move, flare ups etc) but it is at least doable.

I'm sure there were more things I wanted to mention in this post, but I think I'll have to leave it here. I do want to blog more often. I've even wondered about vlogging, but I don't think I could cope with the mean comments.

Exhausted

After months of trying to contact our landlord to get the tiles sorted in our bathroom (they were cracked and falling off), he finally sent someone round! I knew it'd cause some disruption to my sleep pattern, but I didn't expect it to be quite so bad (silly me).

Over the past week or so, I've had to get up and dressed before 8.30am each day. I've not been getting to sleep until 5am on average, so have been struggling so much on so little sleep. I decided I'd get up and dressed, take my meds early and maybe try to have breakfast before going back to sleep for a few more hours. It's been difficult, because of the hammering, drilling etc noises in the bathroom, and my anxiety about having a stranger in the house. I've been drifting in and out of sleep, and have felt even more exhausted than usual. I feel like I've lost so many days, because I've just not had the energy to do much at all. Even conversation has been too much for me, as I've not been able to process well what is being said to me. I doubt I've made much sense when I've replied either.

Thankfully today has (hopefully!) been the last day of this disruption, so I'm hoping I'll be able to catch up on sleep soon. I never feel rested after sleeping (the joys of Fibromyalgia!) but having my, already terrible, sleeping pattern being disrupted, puts me in a whole other level of exhaustion.

Just when you think a symptom (such as fatigue) can't get any worse, it always manages to surprise you!